Main menu

You are here

Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis.

Title

Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis.

Publication Type

Journal Article

2016

Authors

Silverman AM, Verrall AM, Alschuler KN, Smith AE, Ehde DM

Journal

Disabil Rehabil

Pagination

1-9

Date Published

2016 Feb 15

ISSN

1464-5165

Purpose The purpose of this study was to describe the meaning of resilience, factors facilitating resilience and barriers to resilience, from the perspective of persons with multiple sclerosis (MS), their care partners and community stakeholders. Method We conducted four focus groups: two with middle-aged (36-62 years) individuals with MS [one with men (n = 6) and one with women (n = 6)], one for partners of individuals with MS (n = 11) and one with community stakeholders serving people with MS (n = 9). We asked participants to describe what resilience means to them, what factors facilitate resilience and what barriers to resilience they perceive. We analyzed the focus group transcripts for emerging themes and sub-themes. Results Participants found it difficult to generate a concise definition of resilience, but they generated evocative descriptions of the concept. Psychological adaptation, social connection, life meaning, planning and physical wellness emerged as facilitators of resilience. Resilience depletion, negative thoughts and feelings, social limitations, social stigma and physical fatigue emerged as barriers to resilience. Conclusion The unpredictable nature of MS can present unique challenges to resilient adjustment, especially during middle age. However, several factors can contribute to resilience and quality of life, and these factors are amenable to intervention. Implications for Rehabilitation Resilience is the capacity to bounce back and thrive when faced with challenges. People with MS develop resilience through psychological adaptation, social connection, life meaning, planning ahead and physical wellness. Barriers to resilience with MS include burnout, negative thoughts and feelings, social difficulties, stigma and fatigue. Interventions should address both individual and social factors that support resilience, such as promoting positive thinking, planning and engagement in meaningful activities.

Multiple sclerosis (MS) can cause unpredictable physical and mental changes. For many people with MS, these changes may come and go. Middle age can be an especially tough time to manage the changes associated with MS. Yet past research has found that people with MS can cope well with these changes by being “resilient”—that is, by being able to bounce back and keep going after a stressful experience. In the current research, we asked people with MS to tell us what they did to stay resilient and what things got in the way of being resilient. To get multiple points of view on this topic, we also asked questions about resilience to a group of people whose partners had MS and a group of professionals who have a stake in the MS community, such as nurses at an MS clinic and staff at the MS Society.

What did the researchers do?

We held four focus groups: one with six middle-aged men who have MS, one with six middle-aged women who have MS, one with eleven people whose partners have MS, and one with nine professionals. We asked each focus group to tell us in their own words what it means to be “resilient”, what things they do to bounce back from challenges or stress, and what things get in the way of being resilient. We transcribed the focus group discussions and read the transcripts carefully to identify the most commonly mentioned themes.

What did the researchers find?

The focus group participants mentioned five major strategies for staying resilient while coping with MS:

1. Mental flexibility: Finding a “new normal” when things change, keeping a sense of humor and having a positive outlook. One man with MS told us, “I hurt terrible, but I don’t feel bad”.

2. Social connection: Keeping up old friendships and making new friends, with and without MS.

3. Life meaning: Staying involved with meaningful activities, including family bonding, volunteering in the community, or making art or music.

4. Planning ahead to cope with practical challenges, such as making the home wheelchair accessible.

The participants also told us about five barriers that can get in the way of being resilient:

1. Feeling burned out by having to adjust to multiple life changes.

2. Negative thoughts and feelings such as sadness, anger or denial.

3. The stigma of having a physical disability, which motivated some participants not to use assistive devices in public.

4. Social limitations, such as friends not understanding MS, or problems socializing due to lack of transportation.

5. Physical and mental fatigue.

How can you use this research?

There are several ways we can bounce back and keep going while experiencing changes related to MS, such as:

-Make a point of keeping up with friends and loved ones.

-Focus your energy on doing things you enjoy and that have special meaning to you. This might include volunteering, crafting, gardening, making music, joining a religious group, or anything else you enjoy doing.

-Consider starting or continuing an exercise program. For some guidance, check out our fact sheet on [exercise]

-Mindfulness meditation can relieve stress and help us better manage our thoughts and feelings. Learn more at [].

-Energy management is an important part of staying resilient. To learn more about managing your energy, check out our [fact sheet.]

About the researcher:

Arielle Silverman, PhD is a post-doctoral fellow with the Healthy Aging RRTC who is interested in physical disability, resilience, and stigma.

The contents of our website were developed under a grant from National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RT5023-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this website do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government (Edgar, 75.620 (b)).